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Thread: 11 years out

  1. #1
    Join Date
    Jan 2008
    Location
    Utah
    Posts
    155

    11 years out

    Dear Friends,

    When I had my major scoliosis surgery 11 years ago, I read EVERYTHING on the forum. Here's what was missing = follow-up info from those who had surgery a while back.

    So, I vowed that I would share THAT and a way we can all help 3rd-world scoliosis children.

    THIS YEAR'S UPDATE: I was fused from T4 to L4 in 2008. After recovery, I was relatively pain-free for nine years. Five years ago at age 61, I did a solo trip around the world for four months, mostly in 3rd world countries like Myanmar, Vietnam, Nepal, Africa, etc. I always found someone to pick up my gear when I got off planes and yet I could do most everything except lifting.

    About two years ago, I began having significant pain below L4 and last year I was fused L4 through the sacrum with pelvic anchors last year. I am struggling with pain at the base of the sacrum, and I am planning to do some consultations. However, I am functional enough to continue traveling. I just returned from five weeks on the Iberian Peninsula and North Africa. With an inflatable neck pillow (only inflated 25%) placed on car/plane seats with the open part of the pillow faced toward the back of the seat, I could keep pressure off the sacrum. I was able to do all the driving on this trip and fly coach. So, despite the sacral pain, I am managing. I continue to be grateful to those who've dedicated their professional lives to help us scolis with these complicated surgeries.

    OTHER IMPORTANT SHARE: In Ghana, Africa, surgeries are being done on children with extreme scoliosis who would lose their lives without intervention. The non-profit is FOCOS. Every year, I donate to help African kids suffering with scoliosis. If you have been able to get help with YOUR scoliosis, consider helping children without resources. The western doctors who work at FOCOS donate their expertise, but funds are needed for all the other aspects of performing these surgeries. GO HERE to learn about FOCOS: http://www.orthofocos.org/ and go here to see a video of what they're doing: https://www.youtube.com/watch?v=Mbc3...ature=emb_logo. It's heart-warming.
    Ginger Woolley

    Oct 2018, L3 - S1, Anterior & Posterior, Dr Sigurd Berven, UCSF, San Francisco
    ******
    May 2008, T4 - L3, Dr. Ohenaba Boachie, Hospital for Special Surgery, NYC
    ******
    Sept 1967, T4 - T 11, without instrumentation, Dr Thomas Brown, Stanford

  2. #2
    Join Date
    Sep 2019
    Posts
    65

    11 Years In

    Thank you for following up with an 11-year update. Any information we can get is precious. I wish there was more followup and continuity on this site. People seem to post here for a bit and most never appear again.

    I hope your new pain can be contained, hopefully without surgery.

  3. #3
    Join Date
    Aug 2019
    Location
    Kentucky
    Posts
    71

    Thank you for returning

    Ditto for what Tina stated. I havenít read everything but enough for now. Really appreciate the info you shared especially for us 1st timers.

  4. #4
    Join Date
    Sep 2019
    Posts
    65
    Even if people post every so often they're doing well after so many years, that's helpful.

  5. #5
    Join Date
    Mar 2011
    Posts
    10
    I am 60 yrs old and 4 years out from T-4 to sacrum correction. I am doing great. I walk and exercise regularly. I cooked for two days for 12 people on Thanksgiving and
    the only thing that hurt was my feet!
    I had my surgery in NY at Mount Sinai with Dr. Samuel Cho.
    Stacy
    Surgery 2016 T-4 to Sacrum with Dr Samuel Cho Mount Sinai NYC
    48 degree right upper lumber curve
    41 degree thoracolumbar kyphosis

  6. #6
    Join Date
    Sep 2019
    Posts
    65
    Quote Originally Posted by Momsam View Post
    I am 60 yrs old and 4 years out from T-4 to sacrum correction. I am doing great. I walk and exercise regularly. I cooked for two days for 12 people on Thanksgiving and
    the only thing that hurt was my feet!
    I had my surgery in NY at Mount Sinai with Dr. Samuel Cho.
    Super. Do you feel that you fully returned to normal after the surgery or are there some changes you just have to live with? If you don't mind my asking.

  7. #7
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    104
    Quote Originally Posted by Momsam View Post
    I am 60 yrs old and 4 years out from T-4 to sacrum correction. I am doing great. I walk and exercise regularly. I cooked for two days for 12 people on Thanksgiving and
    the only thing that hurt was my feet!
    I had my surgery in NY at Mount Sinai with Dr. Samuel Cho.
    I am 58 years old and 3.5 years out from T-11 to sacrum correction. I am also doing great. I walk, do elliptical, ride a bike and use lights weights for weight training.
    1-year after my back surgery, I had surgery on both of my feet to correct very bad bunions. I feel like my feet give me more issues than my back!

    I am not perfect - I can still get "tight" where my rib hump was when I'm on my feet to long or sitting too long. I need to "mix it up" throughout the day (standing / sitting). I have arthritis in my neck so my neck gives me problems. Before my back surgery I couldn't stand upright for 5 minutes without intense pain so I've come a long ways and am happy.

    Kathy
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  8. #8
    Join Date
    Sep 2019
    Posts
    65
    Quote Originally Posted by KathyInIowa View Post
    I am 58 years old and 3.5 years out from T-11 to sacrum correction. I am also doing great. I walk, do elliptical, ride a bike and use lights weights for weight training.
    1-year after my back surgery, I had surgery on both of my feet to correct very bad bunions. I feel like my feet give me more issues than my back!

    I am not perfect - I can still get "tight" where my rib hump was when I'm on my feet to long or sitting too long. I need to "mix it up" throughout the day (standing / sitting). I have arthritis in my neck so my neck gives me problems. Before my back surgery I couldn't stand upright for 5 minutes without intense pain so I've come a long ways and am happy.

    Kathy
    That's great. Can you walk without a cane? After 6 months of mostly lumbar fusion I still need a cane. Maybe I've just become too dependent on it. I used to love hiking in the woods. That would be hard to do if you need a cane, unless it's a paved path.
    Last edited by Tina_R; 12-04-2019 at 01:37 PM.

  9. #9
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    104
    Quote Originally Posted by Tina_R View Post
    That's great. Can you walk without a cane? After 6 months of mostly lumbar fusion I still need a cane. Maybe I've just become too dependent on it. I used to love hiking in the woods. That would be hard to do if you need a cane, unless it's a paved path.
    Hi, Tina. I walk without a cane. I never needed a cane after my surgery. I have hiked many times since my surgery - I don't do crazy things while hiking - I play it safe and say on trails and don't climb to the top of rock formations!!

    My legs are strong (for my size) and I don't know what I'd do without strong thighs. Being fused to the sacrum, everything I do is basically a "squat."Rock #2.jpgGlacier #2.jpgColorado #2.jpgRock #1.jpg

    I have attached 4 photos. "Rock #1" and "Rock #2" were 4-months post op. I flew from Iowa to Colorado for a wedding. I did rest whenever I could on that trip. "Colorado" was about 2 years post op and "Glacier" was 3 years post op.

    Do you use the cane for back pain or leg pain or just stability? 6-months is still pretty early in the recovery process. You will probably see lots of improvement in the next 3 - 6 months.

    Kathy
    Last edited by KathyInIowa; 12-04-2019 at 05:42 PM.
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  10. #10
    Join Date
    Sep 2019
    Posts
    65
    Quote Originally Posted by KathyInIowa View Post
    Hi, Tina. I walk without a cane. I never needed a cane after my surgery. I have hiked many times since my surgery - I don't do crazy things while hiking - I play it safe and say on trails and don't climb to the top of rock formations!!

    My legs are strong (for my size) and I don't know what I'd do without strong thighs. Being fused to the sacrum, everything I do is basically a "squat."Rock #2.jpgGlacier #2.jpgColorado #2.jpgRock #1.jpg

    I have attached 4 photos. "Rock #1" and "Rock #2" were 4-months post op. I flew from Iowa to Colorado for a wedding. I did rest whenever I could on that trip. "Colorado" was about 2 years post op and "Glacier" was 3 years post op.

    Do you use the cane for back pain or leg pain or just stability? 6-months is still pretty early in the recovery process. You will probably see lots of improvement in the next 3 - 6 months.

    Kathy
    I use the cane because my balance isn't good enough. I should be a bit stronger, too. My surgeon expected that, a walker was prescribed at first and then came the cane. He has not yet told me to wean myself off either. I should probably have more faith that things will get better but it's hard to keep the faith.

    I'm OK in my small house without either because there's always something close by to grab onto if needed. I feel that I would be lost without assistance in a vast space outside the house, especially over uneven ground.

    Your recovery sounds great. Of course we aren't going to be as crazy as we were in our younger days. Actually you're still very young, I see by the photos. I'm in my early sixties. I considered myself fairly youthful until this surgery hit me like a ton of bricks.
    Last edited by Tina_R; 12-04-2019 at 06:57 PM.

  11. #11
    Join Date
    Aug 2019
    Location
    Kentucky
    Posts
    71

    Wow!

    Kathy , you look amazing! I had to start using a cane April of this year due to severe sagittal imbalance (about 3 inches off on R leg) plus severe low back pain. I use to be a gym rat up until age 46 but became a couch potato due to spinal decline. Canít believe how much muscle tone Iíve lost. I recently just returned to the pool to exercise & have enjoyed doing some ballet positions. I can actually twirl! Miss dancing so much. Itís great hearing a good recovery story since Iím fairly depressed facing surgery. I had a bucket list long before the term started & it included trips to Yosemite, Yellowstone & the star train in Ely NV. But will have to wait/see after surgery/recovery. You look so happy-Congrats!

  12. #12
    Join Date
    Jan 2016
    Location
    Sioux City, Iowa
    Posts
    104
    Quote Originally Posted by Tina_R View Post
    I use the cane because my balance isn't good enough. I should be a bit stronger, too. My surgeon expected that, a walker was prescribed at first and then came the cane. He has not yet told me to wean myself off either. I should probably have more faith that things will get better but it's hard to keep the faith.

    I'm OK in my small house without either because there's always something close by to grab onto if needed. I feel that I would be lost without assistance in a vast space outside the house, especially over uneven ground.

    Your recovery sounds great. Of course we aren't going to be as crazy as we were in our younger days. Actually you're still very young, I see by the photos. I'm in my early sixties. I considered myself fairly youthful until this surgery hit me like a ton of bricks.
    I feel like if you need the cane for balance and self confidence then you should still use it. But I guess that is for your surgeon and you to decide! If using the cane gives you the ability to "be up & about & doing things & being active" then I would say that is a positive thing.

    Keep the faith! Really - 6 months out is not that long. I was 55 at the time of my surgery, so a bit younger than you are now (I'm 58 now). At 6 months I was still tired a lot and my back was still sore and "tight" - especially if I was on my feet too much. I think at that point I was still resting quite often - and I know that at that point I was having "good days" and "bad days." At some point you turn a corner and you have more "good" than "bad" days.

    I lived in a small house at the time (we have since moved to a one-level ranch style home) and I remember that I was so glad I had a small house! Less house cleaning - just less responsibility in general. That was a good thing as I was focused on recovering - I didn't need to be worrying about much else. We had sold our company so I no longer worked outside the home.

    You mentioned "I would be lost without assistance in a vast space outside the house, especially over uneven ground." I had that same feeling. For a LONG time I didn't like being in large public places (grocery stores, malls, etc.). I felt very "vulnerable." I was very afraid of someone bumping into me, me tripping, etc. I didn't like crossing busy streets - I became sort of "paranoid" of the chaos around me. For quite awhile I wore my back brace in public - I didn't need it - but I felt like people would stay away from me if I had it on. I was afraid of me "jerking" at a loud noise, having to "hurry" to get across a street - weird things like that. I basically just stayed home a lot and when I got really crazy, my husband and I would go somewhere that I felt was "safe" for me - which was basically just out to eat or something simple like that.

    Needless to say I read a lot of books, watched a of Netflix & wrote a lot of letters! I had created a "gym" in our basement so I did exercise everyday. I was walking outside (if there was no ice) but I had an indoor bike and some basic weights. I called it my "10-pound gym" because my heaviest dumbbell was 10-pounds. Even now, that all I have. I'm just looking to stayed toned & somewhat strong, I'm not looking to win any competitions!!

    I will say, for a long time I felt somewhat "isolated." I really wasn't - but I felt that way. I felt like everyone had a wonderful life, and here I was in this lengthy recovery. I KNOW I had a way better / easier recovery than most people who have this surgery (Plus, I had a "short fusion" - I'm only fused from T-11 to sacrum), so I kept reminding myself of that.

    It took me about a full year to really feel like I had recovered. I had read on this forum that the first year is about a 90% recovery, that year two you notice that last 10% of recovery. That was true for me. I felt really good at 1-year, but I felt even a little better at 2-years. Some of that last 10% was that the "tightness" didn't seem to be there as much, but some of it was my energy level. I could tell in year two that my energy level was a little better than it had been.

    I say these things because I don't think people around us understand the mental aspect of these recoveries. When you feel like you've been "hit with a ton of bricks" that affects you mentally as well as physically. When a very active person is all of a sudden forced to lay around, be very careful of every movement, feel paranoid in public, feel paranoid of the chaos around you - it can be hard to deal with. We do deal with it, but it is a process - and a process that we have to figure out on our own. My husband, my adult children and my extended family were all extremely supportive, understanding and good to me. I always felt very lucky for that.

    Kathy
    Decompression surgery L4/L5
    April 3, 2015
    Twin Cities Spine Center - Dr. Joseph Perra
    Fused from T11 - Sacrum anterior/posterior
    June 24, 2016 - 55 years old at surgery
    Twin Cities Spine Center - Dr. Joseph Perra
    Before Surgery: 42 degrees lumbar, 28 degrees thoracic
    After Surgery: 10 degrees lumbar, ?? Thoracic
    2 inches taller

  13. #13
    Join Date
    Sep 2019
    Posts
    65
    Quote Originally Posted by KathyInIowa View Post
    I feel like if you need the cane for balance and self confidence then you should still use it. But I guess that is for your surgeon and you to decide! If using the cane gives you the ability to "be up & about & doing things & being active" then I would say that is a positive thing.

    Keep the faith! Really - 6 months out is not that long. I was 55 at the time of my surgery, so a bit younger than you are now (I'm 58 now). At 6 months I was still tired a lot and my back was still sore and "tight" - especially if I was on my feet too much. I think at that point I was still resting quite often - and I know that at that point I was having "good days" and "bad days." At some point you turn a corner and you have more "good" than "bad" days.

    I lived in a small house at the time (we have since moved to a one-level ranch style home) and I remember that I was so glad I had a small house! Less house cleaning - just less responsibility in general. That was a good thing as I was focused on recovering - I didn't need to be worrying about much else. We had sold our company so I no longer worked outside the home.

    You mentioned "I would be lost without assistance in a vast space outside the house, especially over uneven ground." I had that same feeling. For a LONG time I didn't like being in large public places (grocery stores, malls, etc.). I felt very "vulnerable." I was very afraid of someone bumping into me, me tripping, etc. I didn't like crossing busy streets - I became sort of "paranoid" of the chaos around me. For quite awhile I wore my back brace in public - I didn't need it - but I felt like people would stay away from me if I had it on. I was afraid of me "jerking" at a loud noise, having to "hurry" to get across a street - weird things like that. I basically just stayed home a lot and when I got really crazy, my husband and I would go somewhere that I felt was "safe" for me - which was basically just out to eat or something simple like that.

    I will say, for a long time I felt somewhat "isolated." I really wasn't - but I felt that way. I felt like everyone had a wonderful life, and here I was in this lengthy recovery. I KNOW I had a way better / easier recovery than most people who have this surgery (Plus, I had a "short fusion" - I'm only fused from T-11 to sacrum), so I kept reminding myself of that.

    Kathy
    I seem to need the cane but I hope I can toss it away someday. I'm starting to doubt that will ever happen. I have heard of cases where people become psychologically dependent on canes and maybe that's me. I hope that's all it is. It's good that you never needed a cane, you're lucky. My fusion is lumbar without the sacrum. My curve was at least 60, though. It impacted one hip, which always felt crunched and compressed after sitting, and overworked after even a small amount of walking. The curve is now maybe 30-ish, he hasn't told me. That's as good as it was going to get for me, so I am post surgery only a little better than where you were pre-surgery. There is still some feeling of compression in the hip after sitting a long time but I can walk without hip fatigue now. With a cane or walker for balance.

    Six months isn't really long but it has felt like an eternity, mostly due to the limitations on being physical. I am not tired so much as weak and still feeling lots of back pain of all kinds. I worry about my muscles atrophying from not being allowed to do anything but walk for exercise. A small house gets just as dirty as a big house and I get to sit around and watch it accumulate. I have time to really see all the dust and clutter and am not able to do much about it.

    It's not entirely paranoid to feel weird in vast public spaces, it makes sense. We are vulnerable and fragile. I go to the supermarket on my own, a huge, mostly uncrowded one. People see my brace and cane. They can be nice about getting me stuff off shelves that is too low for me to reach. At the same time they can be a pain in the neck to walk by without meaning to be. They cut me off because they're impatient and think I'll be slow; then I might have to stop short, which is not good. Sometimes their kids run around recklessly and I'm afraid they will smash into me. People are good, bad, and indifferent about people with a handicap.

    You say you felt isolated. We are a bit isolated because we're suddenly different from most other people. But you're right, we mustn't let it get to us. Going out to eat once in a while is a fairly safe thing to do and a good change of scenery but even there I worry that people will be put off by my brace and stare. I wish they designed these things so that they are prettier. Why not make them a nice gunmetal color instead of that icky off-white? No one really stares, though. Again, it's mostly me.
    Last edited by Tina_R; 12-06-2019 at 01:15 PM.

  14. #14
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,019
    Quote Originally Posted by Tina_R View Post
    Going out to eat once in a while is a fairly safe thing to do and a good change of scenery but even there I worry that people will be put off by my brace and stare. I wish they designed these things so that they are prettier. Why not make them a nice gunmetal color instead of that icky off-white? No one really stares, though. Again, it's mostly me.
    I didn't wear a brace after my last surgeries. After my first surgeries, I wore the brace underneath baggy tops because I didn't want people staring.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  15. #15
    Join Date
    Sep 2019
    Posts
    65
    Quote Originally Posted by LindaRacine View Post
    I didn't wear a brace after my last surgeries. After my first surgeries, I wore the brace underneath baggy tops because I didn't want people staring.
    Under clothing, my brace makes me look hunchbacked so I don't know if that would be an improvement.
    Last edited by Tina_R; 12-06-2019 at 01:25 PM.

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